Evie was born on the 23 February 2014. I had a normal pregnancy and although Evie was born by emergency c-section there were no apparent problems at birth. 

Evie seemed to be developing normally up until the age of five months when we noticed she’d developed a squint in both eyes. We also noticed she wasn’t rolling or pushing up on her tummy like other children her age were. She also kept having vacant moments where she would just stare into space.  She ended up with glasses which made her even more adorable and the health visitor came to complete a developmental check. She told us that Evie was delayed and that she would refer us to the hospital.

On that same day Evie had her first epileptic seizure. 

Evie went into status and had to be rushed into A & E by ambulance. It was such a scary experience but little did I know we’d be having nine more severe seizures and plenty more hospital stays!

Thankfully the medicines worked and after an hour she came round. Because of this they pushed through Evie’s referral and she started receiving physio, speech therapy, occupational therapy and portage.  Evie had an MRI scan showing her brain was immature and an EEG showing she had generalised epilepsy. 

The doctors classed Evie as having global developmental delay.  It was so tough and we were so scared.

What would the future hold?

Would Evie be able to go to school, get married, have children?

After a tough few months and more seizures we accepted our life with Evie would be different from what we thought but amazing as well. Evie’s strength and determination have been so inspirational. Back in February 2016 the 11th to be exact at 4am Evie woke up with a scream . We’d heard this scream before which usually meant a seizure. We rushed into her and sure enough she was convulsing. It was the worst one yet with her whole body twitching so we rang an ambulance straight away and got rushed in.  Evie was in status and as she had been nine previous times we were used to the procedure of the different seizure stop medicines whilst supporting Evie’s breathing. But this time it didn’t work, the seizure didn’t stop so we were told they would have to intubate her. We were so scared. What did this mean? Would Evie wake up? We felt so helpless seeing her lying there with a machine breathing for her. We got transferred to Manchester Children’s hospital PICU where Evie spent a week and a half. During that time she had many blood tests, an MRI scan, and two lumber punctures. The only test that showed something was the MRI. Our baby girl’s brain was covered in this white outline – the doctor said it was like someone had drawn round every part of her brain with a white felt tip. He couldn’t tell us what this meant but said it pointed to a metabolic condition of some kind.  We were devastated. 

Evie was brought round a few days later and just cried and cried hysterically. She couldn’t sit up, or move and she couldn’t swallow or feed. What was happening? Where was our little girl who was bouncing on her jumperoo a few weeks earlier? We spent a total of five months in hospital while the neurologists ran more tests everything was coming back normal which we couldn’t believe as this was far from normal.  Evie still hasn’t gone back to how she was. She has had a massive regression.

On medical forms Evie’s condition is classed as a complex undiagnosed neurometabolic condition!

From other MRI scans we have discovered Evie’s brain has shrunk significantly and because of this her life expectancy is a lot shorter – we were told four months originally but she’s surpassed that now thankfully and continues to amaze us with her courage and strength and this is what keeps us going on a daily basis.

For now we have to live life day-by-day not knowing what the next day will bring but hoping that Evie continues to fight this. 

We are still no clearer as to a diagnosis but Evie is having ongoing tests and her MRI scans are currently in America to see if neurologists over there can shed any light. 

SWAN UK has helped us massively. Without a diagnosis it is so hard and you can feel very alone, but being a member of SWAN UK has helped us feel part of something with other people going through similar things who understand how tough it can be.


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